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Lab results after slowing adding more synthroid (follow up from January post)
After having a nasty fight with my ENDO this January where I insisted that my FT4 and FT3 levels were in the gutter (even though my TSH was low) and feeling horrible. (See my previous post from January for more details)
I have been on a journey the past few months and don't feel like I have gotten very far with increased levels. I don't know if this is because they increase haven't been enough OR if there is something else going on. (I don't know much about RT3, but have seen others discuss it).
Please share your thoughts / advice if I should go back to Endo an ask for increase dosage.
I will include symptoms within the dates of the Lab ranges I post. VIT D, VIT b12, and ferritin are in optimal/normal ranges---VitD and B12 are actually high in ranges.
January--Feeling severe fatigue, inability to lose weight, severe exercise intolerance, swelling, mental recall and memory issues
Current dose 50 Mcg synthroid and 10 mcg Cytomel (split)
TSH 0.718
FT4 1.06 (0.89 to 1.76)
FT3 3.2 (2.3 to 4.2)
*bumped up to 75 mcg post Jan apt--but she took 5mcg of cytomel off--she was afraid I'd be hyper
March labs --symptoms inability to lose weight, less fatigue but exercise intolerance
TSH 0.986
FT4 1.19
FT3 3.4
April--inability to lose weight, mild fatigue,
TSH 0.691
FT4 1.23
FT3 3.3
*post April apt bumped up to 88 mcg per day and 5 mcg cytomel
June Fatigue, inability to lose weight on low glycemic diet despite exercise etc....
TSH 0.321
FT4 1.28
FT3 3.1
So after all this, my FT3 levels have been taking a nosedive and the FT4 levels are crawling up and barely changing. Its been a struggle (actually a fight) to even get my Endo to increase the dose. Should I go up again to relieve symptoms? Or is this TSH too suppressed at 0.321?
I have been on a journey the past few months and don't feel like I have gotten very far with increased levels. I don't know if this is because they increase haven't been enough OR if there is something else going on. (I don't know much about RT3, but have seen others discuss it).
Please share your thoughts / advice if I should go back to Endo an ask for increase dosage.
I will include symptoms within the dates of the Lab ranges I post. VIT D, VIT b12, and ferritin are in optimal/normal ranges---VitD and B12 are actually high in ranges.
January--Feeling severe fatigue, inability to lose weight, severe exercise intolerance, swelling, mental recall and memory issues
Current dose 50 Mcg synthroid and 10 mcg Cytomel (split)
TSH 0.718
FT4 1.06 (0.89 to 1.76)
FT3 3.2 (2.3 to 4.2)
*bumped up to 75 mcg post Jan apt--but she took 5mcg of cytomel off--she was afraid I'd be hyper
March labs --symptoms inability to lose weight, less fatigue but exercise intolerance
TSH 0.986
FT4 1.19
FT3 3.4
April--inability to lose weight, mild fatigue,
TSH 0.691
FT4 1.23
FT3 3.3
*post April apt bumped up to 88 mcg per day and 5 mcg cytomel
June Fatigue, inability to lose weight on low glycemic diet despite exercise etc....
TSH 0.321
FT4 1.28
FT3 3.1
So after all this, my FT3 levels have been taking a nosedive and the FT4 levels are crawling up and barely changing. Its been a struggle (actually a fight) to even get my Endo to increase the dose. Should I go up again to relieve symptoms? Or is this TSH too suppressed at 0.321?
Wow! That is amazing feedback from the Endocrinology conference. Also good to hear that your doctor is willing to increase your med to relieve symptoms. Please keep us up to date on your further progress.
****UPDATE*****
I like to share updates on the results of my posts in case others stumble upon them looking for answers.
Saw Endo today and she DID agree to increase my dose and stated she would continue to do so until I felt better and was higher in the FT4 and FT3 ranges. I was totally shocked, as I was prepared for an epic battle to ensue since my TSH below lab range.
Interestingly enough, she said that she just returned from an Endocrinology conference and was discussing how there is more talk about managing symptoms and FT3 and FT4 levels versus the TSH. So....there is hope that maybe SOME endocrinologists are starting to see the light. Its early, but maybe some are finally starting to look at symptoms and not just labs and adjust meds accordingly. At least mine is.......
I like to share updates on the results of my posts in case others stumble upon them looking for answers.
Saw Endo today and she DID agree to increase my dose and stated she would continue to do so until I felt better and was higher in the FT4 and FT3 ranges. I was totally shocked, as I was prepared for an epic battle to ensue since my TSH below lab range.
Interestingly enough, she said that she just returned from an Endocrinology conference and was discussing how there is more talk about managing symptoms and FT3 and FT4 levels versus the TSH. So....there is hope that maybe SOME endocrinologists are starting to see the light. Its early, but maybe some are finally starting to look at symptoms and not just labs and adjust meds accordingly. At least mine is.......
Your levels are not high enough to worry about RT3 when increasing your T4 dosage. There are other factors affecting conversion to RT3, but increased conversion to RT3 is also a common defense mechanism of the body to prevent excess FT3, which you don't have. Ferritin is a variable that can affect conversion of T4, so you need to increase supplementation with iron to get your ferritin optimal, which for women is about 90 minimum.
1 Comments
Thank you. I appreciate your help. All the best.
Yes, to that. As stated above, "serum thyroid hormone levels are the sum of both natural thyroid hormone and thyroid med. As thyroid med is increased, TSH goes down, and the output of natural thyroid hormone also goes down. Only when TSH is suppressed enough to no longer stimulate natural thyroid hormone production will serum thyroid levels reflect further increases in thyroid med."
Also there is scientific evidence that the majority of hypo patients will have suppressed TSH levels when taking adequate thyroid med. And in the words of an excellent thyroid doctor, "In the best tradition of clinical medicine, a physician should prescribe thyroid hormones as needed to eliminate the symptoms and signs of hypothyroidism without producing any symptoms or signs of thyroid hormone excess."
Also there is scientific evidence that the majority of hypo patients will have suppressed TSH levels when taking adequate thyroid med. And in the words of an excellent thyroid doctor, "In the best tradition of clinical medicine, a physician should prescribe thyroid hormones as needed to eliminate the symptoms and signs of hypothyroidism without producing any symptoms or signs of thyroid hormone excess."
3 Comments
Thanks again GIMEL. If my Endo won't raise my dose, I'll be shopping for a new doctor that will.
Do you happen to know where I can find an Endo who isn't constrained by the TSH in the Columbus Ohio area?
Do you happen to know where I can find an Endo who isn't constrained by the TSH in the Columbus Ohio area?
I just sent you a PM with info. To access, just click on your name and then from your personal page click on messages.
THANK YOU! Much appreciated. One last thought: is there a chance (given where my current levels are) that adding more T4 could work against me and got to the dreaded reverse T3? Or maybe my levels are just not that high enough for that to be a possibility......?
If that Endo is your only option for a thyroid doctor then you are going to have to provide enough contrary information to persuade him that concerns about suppressed TSH are unfounded, and that you need your med increased as needed to relieve hypo symptoms.
A suppressed TSH is an indicator of possible hyperthyroidism only during initial diagnosis. After therapy with thyroid med is started, TSH becomes basically irrelevant. Our bodies evolved with the expectation of a continuous low flow of thyroid hormone from the gland. When a hypo patient takes their total daily input of thyroid med all at once, it has a suppressive effect on TSH. In addition, serum thyroid hormone levels are the sum of both natural thyroid hormone and thyroid med. As thyroid med is increased, TSH goes down, and the output of natural thyroid hormone also goes down. Only when TSH is suppressed enough to no longer stimulate natural thyroid hormone production will serum thyroid levels reflect further increases in thyroid med. You can read about this starting with Rec. 10 and 11 starting on page 13 of the following link.
http://www.thyroiduk.org.uk/tuk/TUK_PDFs/diagnosis_and_treatment_of_hypothyroidism_issue_1.pdf
In the paper you can also read in Rec. 13 that there are scientific studies showing that TSH is frequently suppressed below range when a treated patient is taking adequate thyroid med. That does not mean hyperthyroidism, unless there are hyper symptoms due to excessive levels of FT4 and FT3.
You can also find in Reference 36, page 24 the following scientific evidence that totally refutes the use of TSH to try and assess the clinical status of a hypothyroid patient.
Frasier WD, Biggart EM, O’Reilly D St J, Gray HW, McKillop JH, Thomson JA.
Are Biochemical Tests of Thyroid Function of any Value in Monitoring Patient Receiving Thyroxine Replacement? BMJ 1986;293(6550):808-10
“Measurements of serum concentrations of total thyroxine, analogue free thyroxine, total triiodothyronine, analogue free triiodothyronine, and thyroid stimulating hormone, made with a sensitive immunoradiometric assay, did not, except in patients with gross abnormalities, distinguish euthyroid patients from those who were receiving inadequate or excessive replacement. These measurements are therefore of little, if any, value in monitoring patients receiving thyroxine replacement." Of 148 patients attending an outpatient clinic, 148 were classified by their clinical status by 4 qualified consultants with experience in thyroid disease. Of those 108 were classified as hypothyroid and from biochemical testing, their TSH ranged from 0.1 to 19.7. The TSH for 22 patients classified as hyperthyroid ranged from 0.1 to 14.4. The TSH for the 18 patients classified as hypothyroid
ranged from 0.1 to 123.5.
Clearly TSH has no value in determining thyroid med dosage.
A suppressed TSH is an indicator of possible hyperthyroidism only during initial diagnosis. After therapy with thyroid med is started, TSH becomes basically irrelevant. Our bodies evolved with the expectation of a continuous low flow of thyroid hormone from the gland. When a hypo patient takes their total daily input of thyroid med all at once, it has a suppressive effect on TSH. In addition, serum thyroid hormone levels are the sum of both natural thyroid hormone and thyroid med. As thyroid med is increased, TSH goes down, and the output of natural thyroid hormone also goes down. Only when TSH is suppressed enough to no longer stimulate natural thyroid hormone production will serum thyroid levels reflect further increases in thyroid med. You can read about this starting with Rec. 10 and 11 starting on page 13 of the following link.
http://www.thyroiduk.org.uk/tuk/TUK_PDFs/diagnosis_and_treatment_of_hypothyroidism_issue_1.pdf
In the paper you can also read in Rec. 13 that there are scientific studies showing that TSH is frequently suppressed below range when a treated patient is taking adequate thyroid med. That does not mean hyperthyroidism, unless there are hyper symptoms due to excessive levels of FT4 and FT3.
You can also find in Reference 36, page 24 the following scientific evidence that totally refutes the use of TSH to try and assess the clinical status of a hypothyroid patient.
Frasier WD, Biggart EM, O’Reilly D St J, Gray HW, McKillop JH, Thomson JA.
Are Biochemical Tests of Thyroid Function of any Value in Monitoring Patient Receiving Thyroxine Replacement? BMJ 1986;293(6550):808-10
“Measurements of serum concentrations of total thyroxine, analogue free thyroxine, total triiodothyronine, analogue free triiodothyronine, and thyroid stimulating hormone, made with a sensitive immunoradiometric assay, did not, except in patients with gross abnormalities, distinguish euthyroid patients from those who were receiving inadequate or excessive replacement. These measurements are therefore of little, if any, value in monitoring patients receiving thyroxine replacement." Of 148 patients attending an outpatient clinic, 148 were classified by their clinical status by 4 qualified consultants with experience in thyroid disease. Of those 108 were classified as hypothyroid and from biochemical testing, their TSH ranged from 0.1 to 19.7. The TSH for 22 patients classified as hyperthyroid ranged from 0.1 to 14.4. The TSH for the 18 patients classified as hypothyroid
ranged from 0.1 to 123.5.
Clearly TSH has no value in determining thyroid med dosage.
1 Comments
Great information, thank you. I totally agree with the information you referenced. I guess I'm at a loss to understand why the increases they've already given me have had no effect (virtually no effect) on my free levels. Is this indicative that the increases were not enough?
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I know gimel is going to give you great advice, so I'm not going to get involved in that... I just couldn't help noticing how similar your labs are to my own and the fact that my own endo is only concerned with TSH and took away my T3 med, as well.
It makes me wonder if we could have the same endo, or at the very least, if they went to med school in the same class... :-)
It makes me wonder if we could have the same endo, or at the very least, if they went to med school in the same class... :-)
8 Comments
I don't know Barb :-) sounds like it's possible. What is your TSH is you mind me asking? Is it pretty low?
My TSH is totally suppressed... it's usually < 0.01, but this last test it was up to 0.01. My endo was happy that it was "measurable"... Now she wants it "in range" and to get that, she's willing to take me off all medication!!
Thanks Barb, I am always interested in seeing how others define "suppressed TSH" ----mine is at 0.321, which compared to others I've spoken to isn't that "suppressed".
Wow, sounds like it's time to look for a new Endo. It's amazing that some Endo's (mine included) want to solely look at labs and not hear how patients are feeling or what symptoms we may have.
Best of luck!
Wow, sounds like it's time to look for a new Endo. It's amazing that some Endo's (mine included) want to solely look at labs and not hear how patients are feeling or what symptoms we may have.
Best of luck!
I have an appointment with an NP next week, that I'm hoping will have a different attitude toward TSH and thyroid hormones, but that remains to be seen.
The going thing for endos (or, at least, mine) is to blame symptoms on "something else"... When I mentioned hypo symptoms, she said they had to be caused by something else since my TSH is so low and it shows that I don't need thyroid hormones. Really? Everyone needs thyroid hormones...
I don't really consider your TSH at 0.321 as being suppressed, since the lower reference range for TSH was 0.3, at one time, then ATA/AACE moved it back to 0.4. Some doctors consider 0.3 as being okay; it's only the ones that focus on that reference range that panic.
The going thing for endos (or, at least, mine) is to blame symptoms on "something else"... When I mentioned hypo symptoms, she said they had to be caused by something else since my TSH is so low and it shows that I don't need thyroid hormones. Really? Everyone needs thyroid hormones...
I don't really consider your TSH at 0.321 as being suppressed, since the lower reference range for TSH was 0.3, at one time, then ATA/AACE moved it back to 0.4. Some doctors consider 0.3 as being okay; it's only the ones that focus on that reference range that panic.
Barb, if I my ask for my own knowledge--- why is your Endo considering reducing your medication? Was it solely based on your recent labs--or were you having hyper symptoms that prompted the Endo to reduce your meds?
My endo has already taken me off my T3 medication (refused to refill my script) and considers it "necessary" to decrease my T4 dosage based solely on my TSH level. She says having a TSH level like mine "proves" that I don't need thyroid hormones. She says that if I increase my thyroid hormone levels and/or lower my TSH (you can't get any lower than suppressed...lol), I'm increasing my risk of heart failure. Never mind that every time I get into my car to go somewhere I'm increasing my risk of getting into an accident, but that isn't going to stop me from driving my car...
It's also important to mention that I just had a complete heart workup and all the tests came back normal. I discussed this, at length, with my cardiologist, at the request of my endo. My cardiologist had no objection to my low TSH, as long as my actual hormone levels were in range and I did not have hyper symptoms.
It's also important to note that I have not, ever, had hyper symptoms. My endo, merely, assumes I'm hyper based entirely on my TSH level and the assumption that low TSH = high thyroid hormones. All you have to do is look at my actual thyroid hormone levels, then read the paper gimel linked and you'll see that's not the case.
It's also important to mention that I just had a complete heart workup and all the tests came back normal. I discussed this, at length, with my cardiologist, at the request of my endo. My cardiologist had no objection to my low TSH, as long as my actual hormone levels were in range and I did not have hyper symptoms.
It's also important to note that I have not, ever, had hyper symptoms. My endo, merely, assumes I'm hyper based entirely on my TSH level and the assumption that low TSH = high thyroid hormones. All you have to do is look at my actual thyroid hormone levels, then read the paper gimel linked and you'll see that's not the case.
Wow, that's amazing. I often wonder when the endocrinology community is going to "get it" and understand by listening to patients and their symptoms that TSH is NOT the end all be all. I'm not sure I understand why the AACE isn't doing more with the obsolete TSH factor in educating physicians.
My Endo did mention to me last appt in April (when she agreed to my dose increase ) that too low of a TSH can damage the heart. But she did add that this was especially true if the FT3 and 4 were over range.
I am hoping you have luck with the NP. I am considering finding one if I can't get my Endo to agree to another dose increase. Prior to my pregnancy my free's were in the 60-70% ranges and TSH was probably a 1 or 1.5 and I felt great. I'm in the 40% range currently and feel lousy. Hoping to get relief soon.
My Endo did mention to me last appt in April (when she agreed to my dose increase ) that too low of a TSH can damage the heart. But she did add that this was especially true if the FT3 and 4 were over range.
I am hoping you have luck with the NP. I am considering finding one if I can't get my Endo to agree to another dose increase. Prior to my pregnancy my free's were in the 60-70% ranges and TSH was probably a 1 or 1.5 and I felt great. I'm in the 40% range currently and feel lousy. Hoping to get relief soon.
What doctors can't seem to get through their heads is that it's not the TSH that causes heart problems or anything else... it's too much (or too little) of the actual thyroid hormones. And that's another thing that bugs me - my endo has carped about my low TSH and how hyper causes all these things, but hasn't stopped to think that hypo causes heart problems too... in fact, when I was hypo, my heart rate was dropping down into the 30's when I slept and I was lucky if it went up to 70 when I was excited/exercising, etc. I had to wear a Holter monitor twice to make sure I wasn't having heart issues caused by LOW thyroid hormone levels. My current resting heart rate is around 55, which is already low and every time I see her, my endo starts asking if I'm having rapid heart rate... and she even listens to my heart - I have to wonder if she knows what she's hearing.
I found an article about a month ago that I was going to take to my endo - I had it bookmarked, then my computer crashed and I lost the bookmark and now I can't find the article. Anyway, it was specific in saying that low TSH connected with heart problems assumes that thyroid hormone levels were too high.
I found an article about a month ago that I was going to take to my endo - I had it bookmarked, then my computer crashed and I lost the bookmark and now I can't find the article. Anyway, it was specific in saying that low TSH connected with heart problems assumes that thyroid hormone levels were too high.
Vitamin D 60 ( optimal )
B12 800 (over range, but accepted)
Ferritin low at 20 , but improve since January where it was a 6.
Ferritin has been low for many years something I'm working on . In a nutshell I'm 20 months postpartum and prior to my pregnancy had my free T3 and free T4 levels in the 50 to 70% range and felt great . Postpartum I can't seem to get up to those levels and endocrinologist is too worried about the TSH .
B12 800 (over range, but accepted)
Ferritin low at 20 , but improve since January where it was a 6.
Ferritin has been low for many years something I'm working on . In a nutshell I'm 20 months postpartum and prior to my pregnancy had my free T3 and free T4 levels in the 50 to 70% range and felt great . Postpartum I can't seem to get up to those levels and endocrinologist is too worried about the TSH .
Before discussing further, I have a couple of questions for you. Do you take your thyroid med in the morning before blood draw? Have you been tested for Vitamin D, B12 and ferritin? If so, please post those results.
1 Comments
No, I take nothing prior to labs
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